In September 2007, questionnaires were sent out to field staff present in all 80 countries with UNAIDS offices, which covered 98 middle- and lower-income countries as some of the offices covered more than one country. UNAIDS staff, in conjunction with relevant country staff employed through PEPFAR, were asked to identify the most appropriate country professional(s) to complete the questionnaire. Respondents were contacted by the UNAIDS staff, and UNAIDS or PEPFAR staff were asked to facilitate completion of the questionnaire by country professionals. Questionnaires were returned to the respective UNAIDS country staff member, who reviewed the responses and followed up when necessary with the country respondent.
Subsequently, the completed questionnaires were forwarded to the UNAIDS Secretariat in Geneva. In Geneva, questionnaires were reviewed and if queries arose, country staff was again contacted to try to obtain answers to the queries. Questionnaires were initially piloted in four countries, subsequently revised, and English, French, Russian, Spanish and Portuguese language versions produced. The data collection period was from September 2007 to April 2008.
A substantial number of country respondents indicated that their countries had already developed such guidelines, while the majority acknowledged that such guidelines did not yet exist in their countries. For this reason, two questionnaires were developed at the request of the country respondents themselves: one for countries that reportedly had developed relevant guidelines (G-countries); and another one for countries that had not yet developed such guidelines but intended to do so (NG-countries). Whether a G-country or NG-country questionnaire was to be completed was agreed after discussions between the country respondent and their UNAIDS liaison officer. The two questionnaires covered similar topics, with questions for G-countries phrased in terms of "have you included...", whereas questions for NG-countries were phrased in terms of "would you include...".
Each questionnaire covered the following three areas:
1. The existence of privacy laws in the country
2. The extent to which countries have been able to develop and implement a national HIV monitoring and evaluation system as part of the Three Ones principles that promote better coordination of national responses to their HIV epidemic [6
3. The physical and electronic protection of data, the conditions of the use of data and release of analyses based on these data.
These areas covered the various measures highlighted in the Interim Guidelines that countries can take to scale up services while improving the confidentiality and security of HIV information.
Some of the analyses produced compared responses between G- and NG-countries. The responses from NG-countries can be interpreted as those topics that respondents would "ideally" like to see included in future guidelines and can be characterized as a "vision statement". The responses from G-countries, meanwhile, provided some "reality check" in terms of what policies countries had actually developed and implemented. The null-hypothesis tested in this study was that there were no significant differences in terms of the guidelines that G-countries had developed and those that NG-countries indicated that they would include in the future.
Questions were aggregated into six related categories, each of which dealt with an important measure for securing the confidentiality of HIV information: information governance, country policies, data collection, data storage, data transfer and data access. The scoring system assigned "1" to a positive response, while negative or missing responses received a score of "0". Scores were summed and then standardized so that scores for each category ranged from 0 to 100, where a score of 100 indicated positive responses to all items. Standardization allowed the individual category scores to be compared across respondents.
Standardized composite country scores are presented as median and interquartile (IQR) ranges. Associations between country scores and country HIV prevalence [7
], gross national income (GNI) per capita [8
], Organization for Economic Cooperation and Development (OECD) income classification [9
] and funding received from PEPFAR were investigated.
Comparisons were analysed using non-parametric tests, including the Chi-square test with Yates' correction, Mann-Whitney U and Kruskal-Wallis tests. Standardized composite scores were analysed using univariate or multivariable regression analyses; all analyses were performed using either OpenEpi [10
] or SAS Version 9.1.2 [11
]. All p-values presented are two-tailed.